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Why is relating to patients important? How do you treat brain cancer? What is brain cancer treatment like? What are the benefits of understanding patient experience?
AMA President-elect Bobby Mukkamala, MD, shares his personal journey from brain tumor diagnosis through recovery. Dr. Mukkamala discusses how being a patient reshaped his views on healthcare, the challenges of understanding a cancer diagnosis, the importance of family support—and how these experiences align with AMA priorities like prior authorization reform and addressing physician shortages. AMA Chief Experience Officer Todd Unger hosts.
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Speaker
- Bobby Mukkamala, MD, president-elect, American Medical Association
Transcript
Dr. Mukkamala: So this sort of experience, after 25 years of being a doctor, being knee-deep as a patient on death's door, is just one step closer to learning how to navigate the system, helps me understand what my patients go through.
Unger: Hello and welcome to the AMA Update video and podcast. At the end of last year, we talked with AMA President-elect Dr. Bobby Mukkamala about his brain tumor diagnosis. And today we're speaking with him again, this time about his treatment and recovery and what it was like to navigate the health care system as a patient. I'm Todd Unger, AMA's chief experience officer. Dr. Mukkamala, it's so great to talk to you again.
Dr. Mukkamala: It is always awesome to talk to you, Todd, but particularly awesome this time just because I'm alive. So that's a good thing.
Unger: There we go. I think, not to be morbid or anything like that, but the last time we talked was prior to your surgery, and it wasn't so clear about what was going to happen. So we're really glad to have you back.
For those of you out there who might have missed our previous update, Dr. Mukkamala, why don't you just begin by giving us a quick recap on discovering your diagnosis, determining your treatment plan and what happened from there.
Dr. Mukkamala: Yeah. It was something that happened—started—the discovery of it kind of happened in November of last year. I was at an AMA meeting. And for the first time in about six months, I was giving a presentation to people that I knew well, our home at the American Medical Association. This was the Minority Affairs Section. And it's a group that I've known for more than a decade.
So they've heard me speak before. I mean, they elected me as president-elect at that point. So they've heard me give good speeches. And in the middle of this one, I sort of had what they call an expressive aphasia, where the words I was saying wasn't making any sense.
And at the end, all of a sudden, my phone's blowing up, and people are saying, hey, I think had a stroke. You better go get checked out. And in hindsight, it's the kind of thing that I had been dealing with occasionally, rarely in the middle of other conversations, but with new people that just assume that—I mean, the guy's not prime time news show worthy, but he's a good speaker and he occasionally makes mistakes. But they didn't think much of it. These folks, my friends, did.
And so, long story short, didn't have a stroke. Went to get an MRI scan to make sure that was the case, and that wasn't the case. But the MRI scan, instead of being perfectly normal showed a big tumor on the left side of my brain. So ended up having amazing consultations with some of the top neurosurgeons in the country right on this computer screen with this camera, looking over the scans. And within a month, ended up getting surgery done.
So on Friday the 13, which is traditionally sort of a bad luck day, it was an amazing opportunity to go to Mayo Clinic and have the tumor removed in what's called an awake craniotomy, where they're talking to you. So they're making sure they're not hitting any sort of important nerves while they're taking out as much as they can. And they got 90% of it out.
And then there was a wait for the pathology that took a few weeks. And then the final pathology came back as a grade 2 astrocytoma. So, given the spectrum of a 10-month survival, if it was grade 4, or a 10-year survival if it's grade 2, I'm happy to say that it's a grade 2. And so the average survival is about 10 years.
Unger: So very good news. I mean, when we talked to you last, you were just about to head into surgery. You showed me your scan. I'm not a doctor, but it looked big. And so—
Dr. Mukkamala: Yeah, you looked a little freaked out there—a little more freaked out than we were. But we know the reaction.
Unger: So I'm so glad that you had a chance to emerge from that. And now talk to us a little bit about what you experienced in the wake of your surgery.
Dr. Mukkamala: Yeah, it was amazing that—when we think of brain operations and an 8-centimeter brain tumor, I think most of us think we're going to be in the hospital for a while. Well, post-op day five. So surgery is on Friday. I leave the hospital on Tuesday, and we go spend the night in the Airbnb that we rented there because it was both kids and my wife and my mom and my dad and my sister. It was a crowded place. And so we ended up getting an Airbnb. We're there for one night, and then we fly home on Wednesday. So less than a week after this big brain operation, I'm on an airplane.
And it wasn't the best and most amazing fun travel. But I was happy to be healing at home at that point. And it was a rough first couple of weeks with swelling and not being able to sleep. And the kids and my wife and my mom and dad just constantly taking care of me. It was an amazing experience in that sense.
And it went from a moment of despair at the beginning at the diagnosis, to just absolute love for the family and my community that was just—everybody was reaching out, and everyone was trying to not just send me a message. And they respected the fact that we just needed a little time to heal.
And so after a few weeks, was more mobile. Of course, I couldn't work for six weeks because that was the restriction. But once I sort of made it out of that first few week phase, it was just amazing. This house that Nita and I live in is 100 years old, and there's always little projects to do. And I can tell you that in the 25 years that we've lived here, it's never been more clean, more fixed. Everything is working. Everything's got fresh paint on it. It's ...
Unger: You worked your way through the honey-do list—used that time.
Dr. Mukkamala: Oh, yeah. It was amazing. It was amazing. But yes. I mean, of course, that was a fringe benefit, but it was also amazing just to navigate this health care system and learn so much right before I'm about to take the role of president of the American Medical Association. And so it was wonderful.
Unger: How long between when you had the surgery and when you went to the State Advocacy Summit in January?
Dr. Mukkamala: Yeah, that was a dress rehearsal. So three weeks post-op. I had an assignment to be on the stage and have a speaking role at the State Advocacy Summit in California. And initially, right after the diagnosis, everyone was like, that guy's not going to be able to do this. We better just put it in somebody else's assignment.
And then when I survived surgery, which was something that 1%, 2% of people don't do, when I survived surgery in a way that allowed me to actually function and catch a flight and actually speak, I asked permission to try that one and see how it goes. And that was an internal group. Those are the people that even if I sucked on stage, they would forgive me.
And so I went there. And Wednesday, I get there. And I go up on stage at night just to practice and was reading off of my sheet, and it was terrible. I could barely read. And I was like, oh, crap. So Thursday morning, I wake up at 6:00 in the morning. Go to the auditorium, practice again. It's a little bit better.
Friday morning I go, and it's a little bit better. Finally get on stage Friday at 10:00. And I got a got a solid C-plus on the grade as far as how did this go. And that was enough. I mean, my goal was just to at least pass so then it would make it worth it because I was in speech therapy at the time, and I was going to continue it as long as there was a positive potential goal.
And that's what we assessed at the meeting, was that, you know what? For three weeks, this is not bad. Keep working on it. And then six weeks later, we were in Washington, DC, for National Advocacy, and I got an A-minus on that one. And now it's off to the races.
Unger: Well, I'm definitely giving you an A for courage and effort on that one. That was pretty brave to go and do that.
Dr. Mukkamala: That's like an elementary grade, Todd. Because you and I get along well, and you like me. If this was college, yeah, maybe it'd be B-plus.
Unger: One thing I just can say that is just so you to show up after three weeks after surgery and do something like that. Obviously, something like this has a really profound impact on people. And I'm just curious, how has it changed you?
Dr. Mukkamala: Yeah. I think just being somebody in my 50s, I think all of us, we don't think about the potential end. And yet, here it is staring me in the face. And it made me appreciate so many things, particularly health care.
I mean, besides that, and we'll talk about that in a moment, just things like the expression of love to family, to friends, that sort of thing. It's just nothing that I ever did. I was more of a—what do they call him—Mr. Spock in Star Trek, Leonard Nimoy kind of character. Just kind of a fact—just get to work and do your task sort of thing.
But this made me appreciate the role of just taking that moment to express affection and things like that. I mean, I think it just makes life more pleasant for all of us. And so that was something I learned.
But then just the navigating of health care, the fact that I, within a matter of a week or two, had the opinions of all of these surgeons. And within a month, had this amazing operation at the Mayo Clinic. And now, six weeks after that and working and getting on airplanes and giving speeches, that's not something that most Americans go through—most anybody in the world goes through, frankly.
I was in that 1% that had this kind of access, and 99% don't. But what was also interesting about that is even in that 1%, just the fact that the medicine that I take to try to keep—because it's grade 2, I don't need radiation and chemo if this thing doesn't grow, but there's a pill that prevents that from happening. That's more than a quarter million dollars year.
Unger: Holy cow.
Dr. Mukkamala: And luckily, I have insurance. Luckily, I have insurance after the deductible is met. But right now, I get 10 pills in a shipment, and that lasts for 10 days. And actually, 20 pills—I'm sorry—lasts 10 days. And then I have to get it again.
And so last week, I represent the World Medical—the American Medical Association at the World Medical Association. So I was there with the two other presidents, and that was more than a 10-day trip. And I'm trying to navigate and say, hey, can I get an extra four days so I don't have to go without my anti-cancer treatment?
And my wife, I remember her, she was sitting in the kitchen over there in tears trying to get this shipment of an extra few days just to get through this little bump in the road, a little bump in the road. And this is being president-elect of the American Medical Association, a wife who is an OB/GYN. And we still couldn't do it.
Unger: That's pretty amazing.
Dr. Mukkamala: And that's a system that could be better.
Unger: And, I mean, you think about, again, with all the knowledge you have as a physician and the trouble that you're going through as a patient just to get your medication refilled. And the expense of it is—it's so emblematic of health care today.
Dr. Mukkamala: Absolutely. Yeah. And we need the individual's ability. I mean, even our ability in this home with the background we have in 25 years of careers in medicine weren't able to make that happen. And that was a big deal. I mean, yes, it's a $250,000 medication. So I understand why they don't send you six months worth in case you lose it. And that's a lot.
But insulin—the fact that every three months somebody has to go through a process to get prior authorization for insulin that has a major consequence if you don't take it. And yet, that's what everybody has to navigate. And that's not right.
And so this sort of experience, after 25 years of being a doctor, being knee-deep as a patient on death's door is just one step closer to learning how to navigate the system, helps me understand what my patients go through. Instead of just putting it in the computer, sending the script, and not even realizing what it's like for them when they leave my office to try to navigate that system, this brings me one step closer, and it's an amazing preparation to be their advocate as president of the American Medical Association.
Unger: Now, if I were to call your surgeon and the other physicians involved and other members of the care team, how would they classify Dr. Bobby Mukkamala as a patient?
Dr. Mukkamala: Pretty quiet one, I think. I mean, I was kind out of it. I had this big wrap on my head. There's a picture of me in the ICU post-op day one that my family doesn't circulate. I mean, I literally had to ask my son for permission for it, to use it in a presentation that I'm giving tomorrow at Henry Ford.
And so, yes, I was very much knee-deep in being a brain tumor patient post-op. But afterwards, what was amazing is that I was supposed to go to Mayo Clinic to do a grand rounds presentation in January. And of course, that all never happened because of the tumor diagnosis.
I ended up going to Mayo to get my brain tumor removed and cancel the Mayo Clinic. Well, we rescheduled that for just a couple of weeks ago. And it was amazing to walk into the hospital that helped keep me alive and get this thing out of my brain, literally, to say thank you to my surgeon, to my neuro-oncologist, to all the staff there.
Got a tour of the hospital, literally saw the floor where I was as a patient. But this time, as president-elect of the American Medical Association going to give a grand rounds, it was just amazing to share with them what it takes to take care of a patient after being one of their patients. I mean, I can't help but think that somebody up there is preparing me in exactly this way to take this role next month.
Unger: Did it change the way that you relate to your own patients?
Dr. Mukkamala: It did. It did. And it made me realize—it made me feel guilty a little bit, actually. And the reason for that was that when we are the physician and never having been in that patient position, there are some things that we just don't realize.
When a patient comes in to see me in the office, and they come in and I'm telling them for the first time that the biopsy we took of their vocal cords—because I'm an ENT guy—is a vocal chord cancer, it never occurred to me the consequences of them being there by themselves versus being in a room like I was at the Mayo Clinic with my wife, my kids, my mom and my dad all hearing this.
Because there's the shock of that answer. And then there's the concrete details that they need to know about, what are we going to do next? What do we need to have planned? Is it radiation? Is it chemo? Is it more surgery—the facts, on top of the emotion.
And for one person to be the person that has to figure out all that stuff and navigate it, that's not something that we should expect. And so now with telemedicine, when I'm having that conversation with patients, and they can get their family on the phone, whether they live in California or New York or right here in Michigan, but busy during the day, they can get them on the phone. We have a video call while they're there. So everybody gets that information.
It's just something that never occurred to me before. And it's so simple just to make my patient's life a little bit easier to navigate a terrible diagnosis.
Unger: What a great idea. I love that so much. And just taking that up a level, you mentioned big issues like prior authorization, expense of the drugs that you're needing to stay alive, navigating the health care system. Have you found now that when you think about the things that you've been through, aligned with the priorities of the AMA, for instance, is there anything that's going to change your perspective about how you approach your year as president?
Dr. Mukkamala: Yeah, 100%. And it's just amazing. And again, I went to Catholic school my whole life, and then I went to Hindu classes on the weekend. So I was just a confused kid growing up about what's going on up there?
But now I can't help but think that this is more than just random. I mean, this has to be a plan, to have me have this physician career. And then months before I take office, it's something that God would say, you know what? You're well-prepared for this position, but I'm going to push you a little bit harder. I'm going to keep you alive, but I want you to see what it's like to be a patient before you start hitting the microphone and talking about how we're going to improve health care in this country. I mean, you couldn't plan it any better than that.
And so these are the things, the things that we make a priority at the American Medical Association, things like prior authorization for the MRI scan that found my tumor. I was lucky to get that as fast as I did. Literally, the night that I needed it, I arranged that and got it done. But that's something that people will be waiting weeks, if not longer, for. Let alone, trying to find a neurosurgeon that's comfortable taking this thing out of their brain.
We have a physician shortage in this country. I mean, good luck navigating a system and trying to find somebody that does 50 of these a year, let alone 200 of these a year like I got. And so that's the physician shortage.
So everything we go to the microphone to talk about to try to improve the health of our country and improve our ability as physicians to take care of the patients that we love in our office, everything that we fight for is something that I've felt and witnessed. And so it's an honor to be alive to continue to be the president for this chapter of that fight.
Unger: Well, Dr. Mukkamala, we are certainly looking forward to working with you as president in the coming months. Thank you so much for joining us today and sharing your story. To support AMA's work to fight for physicians and their patients, you can become an AMA member at ama-assn.org/joinnow.
That wraps up today's episode, and we'll be back soon with another AMA Update. Be sure to subscribe for new episodes and find all our videos and podcasts at ama-assn.org/podcasts. Thanks for joining us today. Please take care.
Disclaimer: The viewpoints expressed in this video are those of the participants and/or do not necessarily reflect the views and policies of the AMA.
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